cordila

Interesting - I don't get weak in any specific area I just loose steam overall. The analogy I use is it's like asking a car to go another 50 miles after it's already run out of gas. I have never had any heart issues (Holter monitor, EEG several times, other cardio tests) - mine is strictly an energy issue. I've done a leaky gut repair program thru Metagenics (Ultra Clear Sustain) and found it to be good. I've had candida, iron, and additional parasite testing conducted and the all come back squeaky clean. I had the most excellent dr's appt yesterday. I went to a gyno I totally selected simply because she is less than a mile from my house. I have not gone in 4 years and with all the hormonal issues I have a lot of spotting, etc (I'll spare you the details for all the men on the site). Anyway - I wanted to HUG her! (Summer - she's another angel!!!) When I left I said "I'm so glad you are a doctor!" She said everything we've been talking about! How the gut is the source of all our (collective - CFS, CIDP, ANS issues, etc) problems and while it leads to different manifestations, when you clear up the gut - regardless of the malady - you often improve. She talked about vaccinations kicking off a domino effect and how grains are, in general, a bad idea based on how we process them in the states. She had a client who was so sick and went on a 'final vacation' in Italy and had NO PROBLEMS. She felt so good over there and the food is so clean (by way of processing) that she had no allergy responses at all. She decided to move! My standard labs show that my b's are good, too. You have to run them in a specific way. Dr. Derrick Lonsdale (former head of Biochemical Genetics @ Cleveland Clinic) is the one who ran them for me (long-distance) through his King James Lab. If I were you I would start there. Plus - the B1 through the skin or intramuscular may not have the same yeast problem as oral. I don't know much about oxalates. I'll have to look into that a little more. Right now I'm feeling SO GREAT on the Mayo Mito Cocktail and my extra B1 and my existing diet that I don't really want to rock the boat. Per my new gyno's advice, I'm going to get my allergies and heavy metals tested to see if there's anything else there. My boyfriend is going to do it too (he does everything I do sort of out of solidarity - how cute is that?!). I'll report on the flip-side. -WB PS - I do find that I'm having a hard time sleeping. This is new since I began taking tumeric and extra B1 orally. I have a LOT more energy during the day so it would kind of make sense that I'd be buzzing a little at night. Anyone else have this issue?

Yes - makes sense! Let me know what you find out about neurotransmitters. I find it weird that SSRI's, tryptophan (sp), 5-HTP, and serotonin all exacerbate my symptoms. And I mean symptoms x10!

OK - I'm going to blow the proverbial whistle and call for a time-out. I think there is value in BOTH positions. As for the what-is-belief-what-is-fact I would ask you (all) to consider that we don't ever really know - so standing on 'fact' is most likely never a good idea. Even science, while methodical and tested, is limited by the tools and existing knowledge at hand. We see frequently, once new tools are developed or discoveries are made, fundamental shifts can occur regarding what we thought we knew to be true. The good news is there are always new discoveries (whatever the source) around each corner! And those discoveries bring new possibilities of healing and well-being - and that brings me hope. Like Dizzy I have been profoundly helped by diet management - in particular the removal of gluten, which removed several neurological symptoms like slurred speech, dizziness (I used to have to walk by holding onto the wall), coma-like unrestful sleep, and it did also regulate and normalize my BP and pulse. I cannot answer why but I also cannot ignore the results. The Mayo Clinic suggests I treat my mito disorder with vitamin supplements and I've already seen extraordinary changes! And so these two things have prompted me to ask, if by food management and vitamin supplementation are the only things that have helped me (and I've tried LOTS of methodologies and treatments), why don't more doctors recognize the impact of nutrition in both forms? I would think the fact that Mayo Clinic supports vitamin therapy would encourage more doctors to recognize their value but that has not been my personal experience. BUT! I do see that changing through the 'grass-roots' efforts Summer talked about. And that's why I feel each person here is so valuable! Because each of us can speak to what occurs in our bodies and THAT is the most valuable research there is! I make it my personal mission to keep a rigorous 'health diary' and chart all manner of things from how I feel that day, to the weather, to what I ate, to what type of stress may have occurred that day - all in the hopes that my shady, half-baked, super unscientific research might help me (and my legitimate doctors) make some sort of discovery that will lead to my full recovery. And when I do find something that works for me, I can't wait to share it with everyone here - knowing full well that each body is different and what works for me may not work for others. -wb

I've been GFCF since June 2007! Clocking in @ 3 years. I had the shiners (like you) and the same sleep reaction to gluten. Sleep is not quite the right name. I'd say it put me into a sort of drug-induced coma. When I woke up the next morning (or after a 5 hour nap), I'd feel like I'd been hit by a truck. 5HTP and SSRI's of any sort exacerbated all of my symptoms. And yes - locked in my brain - very good analogy! I'm pretty sure I don't have issues w/soy, corn, or egg but I can certainly give them a try. Many of my GI symptoms have subsided since I started the Mayo Mito Cocktail although I do occasionally get woken up in the middle of the night w/the sensation that I'm going to vomit (but never do) and with an extremely distended belly. If anyone can tell me what that's about, I'd be so grateful! I'm not sure (currently) about candida. I was tested for it and it came back negative. I do, however, continue to have outbreaks of tinea versicolor on my back, front, thighs, etc. Are they connected? Now my main issue is the fatigue that can come on so fast and so completely that it stops me cold. I have noticed a HUGE difference since adding 200mg's oral B1 to my daily vitamin regiment. Last week was a good week. I hope I continue to go in the right direction... -WB

Hi Dizzy! It's so funny about turkey! I can handle chix just fine but turkey makes me feel tired and nauseated. What is up with that? Tryptophan? And I'm very jealous you can do chocolate. Last time I did I ended up ringing the LA-911. While the paramedics in LA are quite handsome (most likely all actors by day) I did find the situation pretty horrifying. I seem to be OK w/soy, eggs, and corn however I wouldn't say that I'm 'healthy' so maybe I'll have to reconsider. Right now I'm battling with allergies (spring) so severely it's hard to tell up from down. I had a fantastic, full of energy week and then last night it dropped 20 degrees in temp and kicked up a massive wind and BAM! Back down for the count. I do know I have some problems with sugar so I try to keep that to a minimum - not easy. I feel like I'm pretty cool with environmental/chemical substances however since I put some of my medication on my skin I understand how powerfully the skin can soak elements into your body so I'm trying to move toward more organic cleaning/bathing/beauty supplies. Summer - I hear what you say about Jenny and driving wedges. I guess at the end of the day the good in any person comes with the weaknesses and I just hope that, when it all comes out in the wash, she'll have done more good than harm. And I also hear what you say about how powerful the grassroots, in-the-trenches movement can be. I'm 100% onboard with that line of thinking. That's why places like this forum are so powerful. I think, while it's a shame we are all battling with the symptoms of our particular maladies, it is wonderful that we live in a time where it's OK to question medical authority, when information for self-research is readily available, and where places of support and encouragement (like this) exist to make the slog a lot easier. And, yes, I too have encountered my fair share of 'angels' who have helped me along the way - some of them wearing white coats -WB

GFCFSFEFCF + chemical free diet What does this mean? I know Gluten Free Casien Free - but what's the rest?

Summer - I want to address something in your post about Jenny McCarthy. I think she has done a lot of good bringing a very powerful light to Autism. Unfortunately, in our society what celebrities say carry a lot of weight. But when they use their voices to bring light to issues that many of us struggle with, but cannot simply call up Oprah and get on her show to talk about it, then I say 'FANTASTIC!'. (Michael J. Fox, Christopher Reeves, Mohammed Ali, Farah Faucett, Katie Couric) No doubt Jenny has made money on the books she's written. But who cares? She is out there talking about kids with Autism and has found a way to help her child! And her book - and her voice - is helping more kids with Autism every day! Her fierce advocation for her son and his well-being is something everyone should celebrate. There are moms on this forum every day who advocate on behalf of their kids. I can't imagine where their kids would be without that support. If there was a celebrity bringing light to dysautonomia - can you imagine how powerful that would be? I take a vitamin supplement (transdermal B1 cream) that was designed by doctors for autism. And it helps me tremendously. My nutritionist in Washington DC put me the GFCF diet and has just published a book/cookbook designed for Autistic children using the prinicipals of this diet. This diet helps (some) Autistic children and it helps (some of) us with dysautonomia/mito. I think the opportunity here is for us not to debate if CFS and Autism are linked but ask the question WHY? Why are we both being helped by the same things? And what other things work for one that may work for the other? It seems like that's what we are all in pursuit of anyway - help. Help with our symptoms. Help to feel better. Help leading 'normal' lives - whatever our malady. -WB

Hi Dizzy - don't be silly! You didn't hijack my post. I'm thrilled that this post is bringing up such heated issues. It's good to get this out and debated on every level, esp b/c I think the sufferers and their caregivers/lovers/friends/families who see the disease pathways and live with the symptoms every day are going to be the ones who, through internet driven research and in-home/in-body testing, lead the grassroots movement to change the minds of the modern medical community. And this movement is happening and already powerful. I see it myself as my own GP and specialist team has begun asking ME questions on how I'm healing myself. I think the medical community has to change it's approach on how they deal with the standard disease process. We're still living in the 'add-to' age with modern medicine (meaning - if we add X pill to this disease it will either a) mask a symptom or kill everything) and we need to make the transition to 'take-away' (meaning - if we remove X stressors, toxins, foods, etc. and lift specific burdens on the body can we create an environment where the body will self-correct?). It is my personal belief (simply stating my own opinion) that many of our diseases (CFS, POTS, ME, Autism, Raunauds, Shogrens, Rhuematoid, etc.) are all linked - how I am not at all certain. And by 'linked' I simply mean that the process by which one group finds healing very well may help another. I love that you brought up 'let food be your medicine and medicine be your food' because I think it states a medical fundamental that has been widely ignored by modern medicine and does a great disservice to the patients it strives to assist. To Ram's point, I am hugely encouraged by the strides made toward understanding the mechanisms behind what occurs in the bodies of the suffers of CFS, POTS, etc. These doctors and this research allows us to better familiarize ourselves with how the body works (in particular how OUR bodies work - or don't - as the case may be) and that research, and those papers, allow us to continue to Google our way toward healing ourselves. Dizzy, you talk a lot about your diet (and how it's helped you). I understand GFCF but don't know the other diets. Would you mind giving me a brief run-down on those? Thanks! Thanks all you guys! This is such an exciting discussion! -WB

Marcia - I always use that quote "Let food be your medicine and medicine be your food." Why is it that doctors only quote "First do no harm?"

Yes - CoQ10 is one of the vitamins listed on the Mayo Cocktail. Good luck! It's helped me a lot. Yesterday I noticed that my energy was able to replenish itself. By this I mean generally, in the past, when I've 'crashed' I could not recover during the day I crashed. I would have to completely stop doing everything and rest for the remainder of the day, sometimes several days depending on how bad the crash. Yesterday my energy seemed to rollercoaster - it went up and down during the course of the day, which is highly unusual. At the end of the day (11pm) I found I still had energy to burn. Contrary to some postings, I get most of my energy when I wake up and then slowly (or quickly - hehe) lose it during the course of the day. So for me to 'finish strong' is unheard of! Good luck on the cocktail - would love to know how you go. -WB

Oh my goodness - how could I forget! I put on transdermal magnesium at night as well. It's been a godsend in regard to helping me sleep.

Interesting info from Cleveland Clinic: Myth - A muscle biopsy is the "gold standard" for diagnosis of mitochondrial disease. Fact - Although the muscle biopsy is a powerful diagnostic tool, it should not be considered a "gold standard." Examination of a biopsy includes microscopic evaluation, enzyme testing, and genetic testing. Although all U.S. labs that offer muscle biopsy meet strict laboratory guidelines, there is no agreed-upon standard approach for enzyme testing. Furthermore, a muscle biopsy with full analysis costs well over $10,000 and poses both surgical and anesthetic risks. In some patients, the diagnosis can be made based on clinical symptoms and a positive blood test (identifying a genetic mutation) or a combination of clinical findings and other non-invasive testing -- in either case, a muscle biopsy is not necessary. Finally, since biopsy results usually do not alter the long-term outcome or treatment considerations, some specialists and patients choose to treat without the need for a muscle biopsy.

Hi Flop: Thanks for clarifying - it was making me so confused (and my friends and family, too!). Hi Dizzy: I'm going to get back on those EFA's. It's funny you posted the link on autism. I've been noticing similarities since reading Jenny McCarthy's book regarding her autistic son. I take several forms of B1. I began with oral B1 but originally couldn't take it due to my gastroparesis. So I began applying it topically in a form called Authia Cream created by Westlake labs. http://www.ourkidsasd.com/products/1300/lsg It stinks to high heaven and the first 2 weeks of application increased my symptoms but I hung in there and it paid off. If you apply the Authia cream first (inner thigh is best) and then put the transdermal B complex cream http://www.leesilsby.com/bcomplexreg.php over top. It turns the stink into kind of a yeasty smell - like your a loaf of bread! After the Mito cocktail I have been able to process food and my gastroparesis seems to be improving - so I've added 255mg of oral B1. I also was prescribed B1 shots by my new endo doctor. My boyfriend gives me shots in the bum 2x's/wk. We started with 10mg and are now up to 20mg. The goal is 100mg every day. I'm not going to lie to you - they HURT. The prick of the needle is fine, it's the fluid that hurts. Thank you for all the links! I have a lot of reading to do. -WB

Hi Hanna: I don't think so. Not at the moment. I feel like that's an expense (and pain) I don't really need to endure as my endo (and I) feel pretty confident this is the issue. And the treatment for Mito seems to be working so I figure I'll continue down this path and see where it takes me. What would a muscle biopsy do exactly? Just confirm the mito? Or would it give information about specific treatments that might help?

Thanks for all the replies! JJB, you're post stopped me in my tracks! I find it very interesting that the O2 levels drop before her cycle begins, esp that they drop 'during the night'. My first episodes began nocturnally and they carry on to this day. So what happens during the night?! There were a lot of questions so I'll try to answer them all. My mito symptoms are not hugely dissimilar to my dysautonomic symptoms. In order of severity, my problems are/were: nausea, fatigue, anxiety/adrenalin, low BP. Those symptoms kick off a host of other symptoms like hormone deregulation, low thyroid, extreme audio/visual sensitivity, etc. Again, you'll see most of those look pretty autonomic. So here's where it starts to look very mito: when I overexert I simply cannot refuel without rest - rest way out of proportion to exertion. So the POTS exercise-makes-better theory for me does not work. In fact, it is to my detriment. Also, I have something I call 'crashes' or feeling 'crashy'. I know others speak of this too but this is what it looks like in me: my entire face falls. It is the weirdest thing. My eyelids droop (very mito) and my wrinkles become very pronounced (O2 related?) and it's almost as if my skin falls away from the bone. I look like another person entirely. Additionally I had fairly severe gastroparesis and nausea that has all but disappeared since going on the Mayo Mito Cocktail. Now I'm just stuck with the fatigue but I've ordered an O2 meter this morning and will report my findings. I also have the strangest nocturnal episodes. They wake me up generally around midnight to 2am and the symptoms can be anything from massive stomach distention (while lying down!), nausea (though now much less frequent), adrenalin rushes. I think it's interesting to note that my episodes began when I was 7 years old and they began with extreme nausea waking me up in the middle of the night. I strangely never vomited from the episodes but certainly felt as though I would. OK - what has helped thus far: Mayo Mito Cocktail (Vit E, L-carnitine, Alpha Lypoic Acid, Selenium, Vit B complex, CoQ10) My own cocktail (3g Vit C, 300mg Vit B1 orally, 40mg B1 transdermally, 20mg B1 2xs/wk IM, probiotic, transdermal magnesium) Diet (absolutely NO: gluten [including spelt and millet], dairy, alcohol [although strangely hard alcohol is OK sometimes but NO champagne <the worst!>, wine, or beer], caffeine) To treat my episodic flare-ups I do the following: Nausea - ice pack on my belly (I mean ICE pack, not just cool-ish - COLD) Shakes - increase in TD B1 and ice pack on my belly Gastroparesis - hot sock on my belly Fatigue - rest rest rest in a very quite location, must be completely horizontal In regard to the Mestinon (and no - no visual snow or disturbances of any kind really), after trying loads of drugs (Florinef, beta blockers, SSRI's, etc.) with disasterous effects I've officially opted out of medicinal assistance. Chiefly because I am on the hunt for the ultimate remedy not just medicinally induced relief of symptoms. I know this may mean I am on the road much longer or may suffer through symptoms when I need not but I just feel that my body does not metabolize ANY meds (even simple aspirin) and I have to listen to that. I also feel that, while meds may help a handful of symptoms, they often create others by inducing an artificial environment. Like Mestinon - flooding the system with acetyl-choline - that's great in the sense that acetyl-choline is required for the parasympathetic nervous system to function however it does not address the fact that acetyl-choline is produced by the splitting of pyruvic acid (the other molecule splits off into oxygen) which is shuttled into the mitochondria by thiamine. So I would still have a thiamine deficiency and deal with hypoxia. I understand that many are helped by meds so this is simply my own personal philosophy. Thanks for the articles, Broken-Shell, I'm going to set about reading them straight away. Toddm1960, please let us know what your doctors say. I'd be open to a muscle biopsy but thus far my endo is 100% convinced based on the empirical evidence so we're currently opting-out of the painful and expensive procedure. Again - I so appreciate your responses! We might crack this code yet! -WB

In 2006 I was diagnosed with dysautonomia. After 4 minutes on the TT I went from 106/56 pulse 76 to 79/47 pulse 112. For the next few years I tried salt loading, water loading, compression hose, etc - none of those elements helped. I never had problems getting out of bed in the morning, could take a hot shower with ease, and was much better lying flat in bed vs. having my head slightly elevated. I did have some symptoms like abdominal distention (that I assumed was stomach pooling) and a hard time standing for prolonged periods of time. And then there was the crushing fatigue, adrenalin rushes, constant nausea, etc., which all resembled the dysautonomic symptoms I've heard all of you talk about. I did, over time, find some things to help manage some of the symptoms like a gluten, dairy, caffeine, alcohol-free diet and a transdermal vitamin B1 lotion that I applied daily. That got me out of my parents house and mildly functional most days. But after a huge backslide due to seasonal allergies (I'm new to Seattle - which is a high-growth area) I landed at a new endo who promptly diagnosed me with a mitochondrial disorder (empirically - low serum B1, off the charts pyruvic acid backed up in my blood, and low parasympathetic nervous system activity. We are also going to explore my cell-oxygen availability as I get cold, blue feet all the time [NOT blood pooling] and it would make sense as pyruvic acid splits into o2 and acytel-choline). Now, as I look back, I can see that after the TTT they gave me a bag of fluids and sent me home telling me I should be fine. But instead I was bed-ridden for 2 weeks and had to crawl to the bathroom. I can see that every time I overextended myself I was bed-bound until my energy stores could fill themselves up again - even if just a little bit. I have recently begun a vitamin regime posted by Mayo Clinic for mito disorders and would you believe my lifelong battle with nausea has all but disappeared! I'm still dealing with bone-crushing fatigue and cannot overextend in the slightest but I've upped my oral B1 from 55mg to 255mg and my IM B1 from 10mg 2x's/wk to 20mg 2x's/wk and am hoping that will help. But here I sit, completely confused. Do I? Did I even have dysautonomia in the first place? I feel so silly as I have educated my entire friends and family on dysautonomia and now I'm not even sure if that's the appropriate diagnosis anymore. Does anyone have any insight? -WB

I know you've made your choice so this comes a little behind the 8 ball but I wanted to weigh in for anyone else considering a move. There are some glowing reports on the Pacific Northwest, in particular Seattle but I want to give you some other information to consider. I moved to Seattle in June of 2008 having previously lived in LA, NYC, Chicago, and DC. My dysautonomia dx came in NYC and the city was too stimulating to consider staying. Seattle is extraordinarily beautiful and lush and simply stunning BUT I have been worse here than other places. If you are weather sensitive at all you need to consider the following: 1. It rains. Constantly. This means you do not get adequate amounts of Vitamin D (far from it) and it can maximize depression if you are at all effected by SAD. Additionally, the wet makes the air to-the-bone cold and I found myself with one cold/flu after another during my first winter here. 2. It is very humid. I don't know about you but when I think of humid I think of Florida or Georgia. I suppose it is a no-brainer that it would be humid, since it rains all the time, but the humidity actually surprised me. It can get quite stuffy and stifling - at least that's been my experience. My body does much better in 90 degree dry heat than it does in 70 degree humidity. 3. Low pressure systems are constant. Whenever a storm front moves in (which is all the time) the pressure drops and there is less oxygen available in the air. The effect this has had on me is it has increased my fatigue, lowered my BP (no!!!) thereby increasing my pulse, and made me 'air hungry' and caused an overall increase in my symptoms. 4. Allergies! I have not been impacted by allergies in my life so I was completely caught off guard when allergy season arrived mid-April and it crippled me. Seattle is a very high-growth area so when things are in bloom there is truly no escaping the pollen. I am not particularly stuffy but histamine increases vasodialation so once my veins open further I'm a goner! I agree with everyone that Seattle is beautiful but the above are making me consider a move too....out of here. -Good luck on your new home! waterbaby

hi ramakentesh: my dysautonomia diagnosis was never given a distinct flavor by drs. my TTT was 106/57 pulse 76 at the beginning (supine) and within 4 minutes I was 79/41 pulse 112. At that point they put me back to save me from passing out. I've never seen any ANS specialists (ie Vandy, Cleveland Clinic, Mayo) and have been more interested in the reason for the dysautonomia as it generally doesn't appear in a vacuum. The empirical evidence now points strongly toward mitochondrial issues which I'm treating with vitamin therapy with some success. My improvement can be broken out into 2 chapters over the course of the last 4 years: Chapter 1: going off gluten/dairy/caffeine/alcohol. These dietary restrictions immediately evened out my BP and lowered my pulse. It restored my equilibrium (previously I could only walk by using a hand along the wall as guidance), and generally took me from bed-bound 24/7 to mild functionality. Chapter 2: introducing B1 transdermal cream (Authia Cream by Westlake Labs). Applied daily, this cream, over the course of 2 years, allowed me to move out of my parents house, take on full-time employment, move to Seattle (from the small city my parents live in 5 hours away), and enter into a romantic relationship. While all of those strides forward have been fantastic I am still far from 'normal'. Most recently the Mayo Mito cocktail of vitamins has all but taken away what was a daily plague of nausea. My B1 injections are going well (although I've not noticed a discernible difference) and I'm now up to 15mg 2xs/week. The goal is to slowly build up to 100mg/day, the level at which others have reported marked success. I have suffered a tremendous setback since mid-April, which I attribute to Seattle seasonal allergies (actually the Seattle climate in general - constant low pressure systems and high humidity - both starving the air of oxygen), both new to my system and reported to be an extraordinarily vicious year. I suspect increased vasodialation (common w/histamine) is lowering my diastolic BP and (of course) increasing my pulse to 80-130 BPM resting. This is causing crippling fatigue and symptomatic episodes (irritability, racing brain/wired feeling, stomach pooling, adrenalin rushes) due to low BP. I notice the moment I return to my parents house (a more arid, albeit warmer, climate) my energy and stamina return. I find your posts always very interesting as you seem to have a probing mind into the why's of our particular disorder pathway and use the latest research to strike forward into new theories. Keep 'em comin'! -waterbaby

nauthiz; I've had the exact same thing the last few weeks. I think it's seasonal allergies. I'm not effected in the way a 'normal' person is but I believe the sore throat is post-nasal drip and the breathlessness is due to the histamine's vasodialation properties. My BPM has been around 80 supine and 110-130 standing (not running around - just standing). My BP has been 90/40 which says the blood is coming out of the heart just fine but is having trouble getting back from the body. I had acupuncture today in the hopes that it will help. I also have been doing the Neti Pot 2-3 times a day. I can't metabolise meds but if you can maybe try allergy meds. Good luck! waterbaby

I'm a little confused about my body after reading these posts. My best time is usually in the mornings. I generally awaken feeling refreshed and energetic (although not at the moment - HUGE allergy season in Seattle...). I tend to tire during the course of the day. Additionally, I can only recover by lying down. In fact, (unfortunately) I have spent days upon days in bed and generally that's the only thing to get me able to get back on my feet again. It appears I am 100% opposite from the posts here. Does anyone have any idea why?...

I have to stay yards away from any type of caffeine, esp coffee. Very tragic. I will say that (icky topic coming up...) if I am backed up in excess of a week or more I will resort to coffee as a rescue remedy. After 3 sips I'm usually able to go. The trouble is, I am then so wired for sound I can barely stand it. I am then irritable and panic attacky for the rest of the day. When symptomatic I notice my feet tend to be blue/cold and my hands cold/clammy.

The doctor you trust is the one inside you. YOU live in the petri dish - not them. I believe we all have gut instincts on what is, or isn't, wrong with us - even if it's only on a base level. We may not have the education of our physicians, however we live daily with the effects of the disorder. Learn as much as you can, listen to your body, and if a doctor threatens to cut you off if you seek second opinions or alternative treatments then maybe they're not the right kind of person to be part of your healing team. How do you find a Dr. you trust? You trust yourself and invite the doctors you see to come alongside you on your journey to wellness. If they can't be team players - they're outta there. Nobody is Coach of your body but you. -waterbaby

Just found one more thing..."In most tissues of the body, the response to hypoxia is vasodilation. By widening the blood vessels, the tissue allows greater perfusion." Hypoxia is lack of oxygen. Check out the symptoms of altitude sickness. Sound familiar? * Lack of appetite, nausea, or vomiting * Fatigue or weakness * Dizziness or light-headedness * Insomnia * Pins and needles * Shortness of breath upon exertion * Persistent rapid pulse * Drowsiness * General malaise * Peripheral edema (swelling of hands, feet, and face) If we (or some of us) have a mitochondrial disorder then we are not (among other things) getting enough oxygen. Could some of our dysautonomic symptoms be caused by lack of oxygen? Does anyone else notice that they are markedly worse during the following: -air travel -travel to places of high altitude or on mountains -days with high humidity (esp when hot as well) -days with low barometric pressure Has anyone ever had their oxygen saturation levels measured?

hi ramakentesh, I've been on the B1 bandwagon for the past 2 years championed mostly by the research of Dr. Derrick Lonsdale. Through his protocol I have been on transdermal B1 for 2 years now. It has greatly improved my circumstances but I still feel quite far from the 'normal' category. Interestingly, I noticed something else yesterday (now that I am tuned into the mito issue). I moved to Seattle in June 08 and since then have had more issues than before, with the exception of dry, crisp, cold winter days. Yesterday a low pressure system moved in and I immediately 'crashed'. Additionally, my feet turned blue. What I realized is that my blue feet is not blood pooling - it's lack of oxygen! If the mitochondria is dysfunctional, and therefore not able to produce fuel and oxygen for my body, then an additional lack of oxygen in the air would cause an increase of symptoms. The same goes for humidity! So Seattle (home of constant low pressure and humidity) is the worst place for me. It is also interesting to not that the Pacific Northwest has the highest instances of MS in the nation - by far! Could it be due to the lack of oxygen? I also want to post that I received my first B1 shot today. The needle was OK but the actual fluid was very painful! I only received 10ml (the goal is 100ml daily) so I got the wimp version of a taste of what's to come. I'm to do 10-25ml 2x's a week and then report back to my endo in 2 months time for another blood draw for thiamine levels. All my eggs are in this basket. This HAS to work. I'll keep you posted. And to you Broken Shell, Rachel and others - please keep posting your progress and any incidentals the doctors may tell you. There are many of us watching your posts with baited breath. XX Waterbaby